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Community Consultation Process

Community Consultation Process. How to Conduct Research in AI/AN Communities Northern Plains Tribal Epidemiology Center Ft. Yates, ND June 17, 2005 William L. Freeman, MD, MPH, CIP Director of Tribal Community Health Programs Northwest Indian College http://www.nwic.edu

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Community Consultation Process

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  1. Community Consultation Process How to Conduct Research in AI/AN Communities Northern Plains Tribal Epidemiology Center Ft. Yates, ND June 17, 2005 William L. Freeman, MD, MPH, CIP Director of Tribal Community Health Programs Northwest Indian College http://www.nwic.edu Lummi Nation http://www.lummi‑nsn.gov 2522 Kwina Road Bellingham, WA 98226‑9217 360‑758-2175 fax 360‑647‑7084 wfreeman@nwic.edu WilliamLFreeman@att.net

  2. Hy’shqe siam -Thank you, respected teachers • Community members, & community IRB members • Sam Deloria, Lisa Preston, and others • IRB members • Dr. Francine Romero, and others • IRB staff • Helen McGough, Moira Keane, and others • Researchers • Participants • Carolyn Robbins - Wife

  3. Usual process steps of research science colleagues science colleagues science colleagues science colleagues science colleagues Identify problem Diagnose problem Develop plan Generate protocol Get funds, approvals science colleagues science colleagues science colleagues science colleagues science colleagues Implement protocol Collect data Analyze data Draft results Report results

  4. Usual process steps with tribes • Obtain approval of tribal government • also add the Tribal Resolution of approval, and possibly letter of support, to PI’s application for funding • tribe may contribute critical major resource[s] • Have local people help implement the project • provide space, personnel • Have local people collect some data • interviewers, observers • Send final report to tribe • PI may summarize the report in person

  5. Process steps – fund, implement, data, report science colleagues science colleagues science colleagues science colleagues science & community colleagues Identify problem Diagnose problem Develop plan Generate protocol co-fund, approvals science & community colleagues science & community colleagues science colleagues science colleagues science & community colleagues co-implement protocol co-collect data Analyze data Draft results co-report results tribe’s resources [fitness center]; PXE, Inc [Pseudoxanthoma Elasticum] http://www.pxe.org ; how to consent before drawing bloods

  6. Process steps – draft results science colleagues science colleagues science colleagues science colleagues science & community colleagues Identify problem Diagnose problem Develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data Analyze data co-draft results co-report results hantavirus [first 2 articles ]; report of outbreak of congenital syphilis

  7. Process steps – co-analyze data science colleagues science colleagues science colleagues science colleagues science & community colleagues Identify problem Diagnose problem Develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results People Awakening - “become healthy” vs “the way life is supposed to be”

  8. Process steps – co-generate protocol science colleagues science colleagues science colleagues science & community colleagues science & community colleagues Identify problem Diagnose problem Develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results randomized clinical trial--tribe disapproved 1 arm of 4; analyses by tribes in Spirit of Eagles led to new epi questions to answer

  9. Process step: co-develop plan science colleagues science colleagues science & community colleagues science & community colleagues science & community colleagues Identify problem Diagnose problem co-develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results Kahnawa:ke--change foods in schools, do not try to force change in members’ stores

  10. Process step: co-diagnose problem science colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues Identify problem co-diagnose problem co-develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results “quantitative data” vs. “qualitative data with tribal perspective”; PXE

  11. Process step: co-identify problem science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-identify problem co-diagnose problem co-develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results “social pathologies of alcoholism” vs “resiliencies against alcoholism”; NARCH

  12. Possible process steps with Native people science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-identify problem co-diagnose problem co-develop plan co-generate protocol co-fund, approvals science & community colleagues science & community colleagues science & community colleagues science & community colleagues science & community colleagues co-implement protocol co-collect data co-analyze data co-draft results co-report results

  13. Community as Co‑Investigator (Co‑I) • A continuum, from minimal to maximal • A story of not listening / listening • Communities being present vs. being Co‑Is • Possible measures of community as Co-I • percent of time community Co-Is talk in [all] meetings • number of times/day scientist Co‑Is are uncomfortable, do not understand, or learn something new • percent of plan/protocol/analysis/report is influenced or changed by community Co‑Is • Time consuming • Sometimes emotional

  14. Community‑Based Participatory Research (CBPR) • Producing new knowledge by "systematic inquiry, with the collaboration of those affected by the issue being studied, for the purposes of education and taking action or effecting social change." Green LW, George MA, Daniel M, Frankish CJ, Herbert CJ, Bowie WR, et al. Study of Participatory Research in Health Promotion. Ottawa: The Royal Society of Canada; 1994. ISBN 0‑920064‑55‑8

  15. CBPR ‑1 • Based on a mutually respectful partnership of researchers and communities • Involves collaboration, mutual education, and acting on results developed from community‑relevant research questions Macaulay AC, Commanda LE, Freeman WL, Gibson N, McCabe ML, Robbins CM, Twohig PL, (for the) North American Primary Care Research Group. Participatory research maximises community and lay involvement. BMJ 1999; 319:774‑778 http://www.bmj.com/cgi/content/full/319/7212/774

  16. CBPR ‑2 • Not a dichotomous category -- "yes/no CBPR" • Same continuum as that of “community as Co‑I” • Examples suggest CBPR aspects are possible even in clinical trials • CBPR especially in research involving behavior, culture, values, beliefs, attitudes, sensitive issues • sensitive pathologies: alcoholism, genetics, violence • (= core strengths & resiliencies: sobriety, relatedness [who is family], maintaining Native-healthy families) • including issues outsiders may not consider to be sensitive: e.g., TB, impetigo, head lice

  17. Native values related to research • Protect communities • Respect elders & knowledge of community • Respect Native communities, strengths, and survival • Promote resiliency, help activate the community • Respect and promote tribal sovereignty

  18. Partial scientist bibliography • Cornwall A, Jewkes R. What is participatory research? Soc Sci Med. 1995; 41(12):1667-1676. • Israel BA, et al. Review of community‑based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998; 19:173‑202. • Public Health Practice Program Office, CDC. Principles of Community Engagement. Atlanta: Centers for Disease Control & Prevention. 1997. http://www.cdc.gov/phppo/pce/index.htm

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